Encouraging report

This was taken from a post on a forum I participate in. The contributor uses the sign in name of … PrayN4aCure

“I wanted to give this forum an update on my participation in the clinical trial at the University of Texas in Houston. I was reluctant to comment beforestudy was completed but was compelled by my wife to do so. It has been nearly one month since my first infusion, but my family has witnessed some clear improvements.”

“The first thing that they noticed was my freezing has completely stopped. The next biggest changes are that I no longer have any tremors, my rigidity has lessened, and my gait has improved where I no longer drag my right leg. What I noticed, is my speech has improved along with my vision has become clearer, and my jaw and tongue no longer quiver when I open my mouth.”

“I only had a 33% chance of receiving the real stem cells on the first leg, so I wasn’t expecting anything, but I did notice after 2 two weeks I started feeling a little flushed each day. My blood pressure remained steady, and I temperature was normal, but I remember the Dr. asking me during the infusion how I was feeling and if I felt flushed. Just an observation.”

“So if I got the Placebo, all I can say is sign me up for another. I am patient 37 out of 45 and I am in the last group. Group 1 has already received their 2nd infusion and mine is scheduled at the end of February. I remain cautiously optimistic and hopeful that this study will prove to be a viable therapy for those who have any form of neuro-degenerative disease, until a complete and effective cure has been has discovered.”

“I will keep y’all updated.”

Explanation of proceedure involed: additional information provided by another forum member using the user name of Despe

“Bone marrow extraction from a healthy donor was obtained by aspiration under local anesthesia. Testing was performed using FDA-approved licensed kits by Gulf Coast Regional Blood Center. MSCs were expanded using a Terumo Quantum Bioreactor29 by the Center for Cell and Gene Therapy of Baylor College of Medicine under current Good Manufacturing Practices designated by the FDA. The total quantity of allo-hMSCs was reached in 3 passages. Thawing was initiated on infusion day, and allo-hMSCs were aliquoted into a 250-mL transfer pack with 5% buminate. Release tests were performed on the pooled cells (purity, viability, cell dose, and microbiological testing).”

Comprehensive Nutrition

I wanted to tell you about what I am using and the impact it has made in my life. I had purchased a helmet to protect my head as I had continued to fall. But I forgot to put it on before going to the hospital to visit a sister who had fallen and injured her back. As I was stepping from the curb onto the sidewalk, I didn’t get my foot raised quite high enough, causing me to stumble. The thought flashed through my mind..(You didn’t put the helmet on and now you are going to face plant on the cement.) But miraculously, I was able to move my feet quickly enough that I was enabled to recover my footing. I’m sure it wasn’t a pretty dance, as several people came to make sure I was ok. I attributed my rescue to be by the grace of God and the improved comprehensive nutrition of the New Eden product I had begun to consume. The next week, I was feeling so good, I was working outside and decided to pull a hose around to water an Angel Trumpet Bush… and as I was pulling hard,when the hose snagged on something, it stopped me so suddenly that it caused me to fall backwards. Thankfully, I had the helmet on, because I hit the cement statue of a child holding a fishing pole, so hard that I dislodged the pedestal from the soil and knocked the child off of the pedestal. Although my shoulder was sore and where the cement had struck my spine was bruised and swollen,by the third day, the pain was all gone, the swelling had receded and it was as if it had never happened. Again I thanked the Lord for leading me to this more comprehensive nutrition. As you probably know, people with Parkinson’s frequently cease to swing their arms as they walk. Mine would just hang at my side. But in about the last month I have noticed the swing has returned to my arms when I am going into a store or even around the house or going from house to car. Again, the only thing I have added to my regime in the last little while is the more comprehensive nutrition. Also, my voice has been terribly weak, and I have a friend who is hard of hearing, When she called me on the phone this week, she said; “You are speaking louder ! And I noticed that the last time we were together, I could hear you better !” What can I say, but Thank you for the tool of more comprehensive nutrition.

I received this letter today from Dr. McDaniel:

“The clinical benefits in Parkinson’s Disease was not a fluke or an isolated brain function restoration event. I attach the highest level of evidence based science we have had the research funds to conduct. It was at the Miller School of Medinine in cooperation with the Miami Jewish Health Service. The Jewish facility if the largest retirement in-house operation on the East Coast and has 150 dementia patient beds and an out patient group in early Alzheimer’s disease patients, not ready for being institutionalized. They had done drug company Alzheimer’s research for over 20 years and were experts. All FAILED prior research efforts conducted in the past were designed to determine if a potential drug would SLOW the progression of dementia. They had never had a patient improve memory and cognition.”

“The idea and intent of our plan to test more comprehensive nutrition met skepticism and cynicism to the point of being insulting and hostile by the investigative team. It was worth more than any earthly value to see and hear their responses to our outcome in 30 pilot patients that the medical school IRB demanded a pilot study be done with all our funds, to show if their was toxicity. We had no toxicity what so ever with nutrition. But we got a bonus. There was 69% benefit to memory and cognition restoration, to their astonishment. 46% improved memory and cognition and 23% did not progress. Thus both groups beat any study ever conducted.”

“The CD-14 monocytes with adult stem cell potential increased nearly 400%/ We drew blood on entry and exit a year later and froze the serum. When the Brain Derived Neuro-Growth Factor assay became available; the BDNGF was elevated in the serum even though it was diluted with the entire blood volume. We had an objective mechanism of action (MOA) for the clinical benefits. The adult stem cells migrated into the brain to replace the degenerated neurons and the BDNGF supports the differentiation of the stem cells to become neuros to increase memory and cognition function.”

“This is why we have had multiple anecdotal reports of benefit in cerebral palsy children and adults, Parkinson’s, strokes, Down’s Syndrome, Fetal Alcohol syndrome, seizures, multiple sclerosis, amyotrophic lateral sclerosis, olivary nucleus dementia, fragile X dementia in boys, brain trauma and retinal blindness. Just to name a few top incidence conditions.”\

Dr McDaniel sent me his desk top file on studies in which brain function was documented to have improved. I saved them on my computer, but have not included them in this post. Please reach out to me if you would like to see the documented data.

Perspective

I saw a line about the Flicker Effect, so naturally my curiosity was peaked. the following dial0g, explains it.

…………………………………………….

Managing the Flicker Effect; Conversation with Neo… From: Parkinson’s News Today by Dr. C | September 17, 202

“Why are you standing on top of that chair?” Dr. C sees Neo precariously balanced on the chair under the kitchen ceiling light. Neo is the part of Dr. C’s brain that functions as his inner voice.

“This lightbulb has been flickering. It’s so annoying! I’m trying to fix that.” Neo wobbles a bit on the chair, reaching a bit farther to tap on the lightbulb. “Sometimes, if I give it a little whack across its metaphorical lightbulb ‘head,’ it will stop flickering.”

While Neo climbs down and drags the chair back to the table, he asks, “Come to think of it, isn’t that like the ‘flicker effect’ you’ve been writing about?”

Dr. C carefully puts down his morning bowl of strawberries and finishes the last careful swallow before he replies. “Like the flow of electricity to a lightbulb, we have a flow of neural activity in our brain. A constant stream of it. When the brain gets damaged with Parkinson’s disease (PD), the flow of this stream gets interrupted. We get brief episodes of PD symptoms in the early stages. We start to feel symptoms that seem to flicker on and off.”

Neo nods. “That makes sense. Like the lightbulb, our system will flicker before it fails. Does that mean if I tap your head, you will function better?”

“Well, sort of.” Dr. C laughs. “What helps is using a shift in perspective — a head tap of sorts — to bring new possibilities to light. The shift is about changing how the flicker affects my life. When I decrease the flicker effect, my symptoms are not so loud.”

“Are you saying that PD causes a ‘flicker effect,’ and you can do something about that?” Neo asks, a bit incredulous.

“Exactly! If we can manage the flicker effect, it keeps the well of resources from running dry and decreases our chance of experiencing a threshold crossing event, thus avoiding the ugly days.

“I know when I’ve crossed the threshold. My thinking isn’t clear, and my muscles aren’t working properly. The ability to interact with the world in a meaningful manner is significantly curtailed. I manage the flickers of my ‘broken brain’ to minimize crossing over.”

Dr. C continues, “If I do cross over, it takes me 24 to 48 hours to recover from the ugly day and return to just having a bad day. So many resources are drained when dealing with the ugly day. To lessen that, I use threshold management. Successful threshold management frees up resources, which allows me to work on mindful movement.

“I use the phrase ‘broken brain’ in reference to the experiences of crossing over the threshold. It doesn’t mean that PD patients aren’t fully functional the rest of the time. It isn’t meant to be disparaging. It is a wake-up call that says, ‘PD patients need to manage, as much as they can, the symptoms and their lives to be as functional, productive, and, may I say, happy as possible. I’m using the term ‘broken brain’ as a huge, red stop sign that says, ‘Don’t give up the fight.’”

Dr. C. offers, “It has taken seven years of mental retraining to discover and implement my personal PD brain rehab program. One of the most important parts is exercise. Many researchers and clinicians know that exercise can offset the progression of PD. I am always citing research and references that support the compensatory strategies that I share with my readers.

“Medical studies have indicated that proper exercise consistently improves cognition and is linked to enhanced neuroplasticity,” Dr. C continues. “Exercise is a huge part of my PD brain rehab program. Fortunately, I still work in our gardens several times a week. A couple of hours on good or even bad days, and the benefits are worth the effort in overcoming my resistance. There are plenty of days when exercise is the last thing this body wants to do.

“Some may hold on to the idea that there is a quick fix and cure out there,” Dr. C says. “For me, I believe in the power of the human mind to rewire and heal. We just need a good map. This map-making is what I started devoting my efforts to seven years ago.”

Neo smiles and points at the overhead kitchen light. The light has stopped its blinking. Neo says, “We are on the edge of a new frontier, learning how to use the new map. New tools to help people live better with Parkinson’s will continue to emerge, improving what is possible. Maybe someday we will understand how to help people use threshold management as part of a rehab map for living better with PD.

Conversation on ideation

Please read this discussion and offer your own thoughts. @mckchart said :

I asked the same question (why me ) but get one thing straight it’s not a death sentence so be very positive and make sure you don’t let it get you down ,many a famous person has thrown in the towel and done the unthinkable ,just make sure you have someone to talk to when things get on top of you …….Parkinson’s educator ( feel free to contact me )

……………………………… Here is @pdpatient’s response :

@mckchart, the “unthinkable” was excellently phrased by you and I couldn’t have said it better. However, you have inadvertently opened the proverbial pandoras box for some PwP’s such as me.

I was formally diagnosed in the early summer of 2014 by an MDS af the University of Columbia, NYC. I fell into a rut and things went ft bad to worse and I was contemplating the “unthinkable,” which I really hadn’t thought through. My son was 14 and my daughter was 9 and I was the only breadwinner of the family. My only concern for my family was that I would need to die in such a way that it could not be labeled as a suicide. I had my policy long enough, but I could not trust in the system to honor the payout for a suicide.

Around that time, my most favorite movie actor – Robin Williams had also received a bed diagnosis . I was devastated. Next thing I heard, he had committed suicide. Oops. I have said the “unthinkable,” but it is time for us to face the monster head on and find a way to make this widely known to PwP’s, newly diagnosed PwP’s and their families.

Thankfully, my family came to my rescue and I agreed to take powerful medications that brought me back from the brink. I survived and my family is doing well still. I am grateful to God and the Universe for everything that I have been fortunate to receive despite my perception that others are more deserving than I. After all there are almost 8 billion people on this planet and I am only one of the lucky ones that is still alive

I learned along the way that life doesn’t end with a Parkinson’s diagnosis. Every doctor that I have met has told me that I was not facing a death sentence. True. However, what they don’t say is that the possibility of suicide in newly diagnosed PwP’s is extremely high. This is an existential problem that is overwhelming in its impact and understated in its awareness.

Unfortunately, I am still haunted by the ghosts of this seemingly “easy way out” or so as it seems. It is a path chosen by many and it rears its ugly head once in a while when the symptoms get worse.

This is a topic that is ripe for involved and in depth discussion.

…………………………… P Bear’s response

I do not expect to do myself in over Parkinson’s. However, at one time I had an uncontrolled chronic pain condition that did cause suicidal ideation.

Each person’s circumstances are unique. It is important to tend to our responsibilities. That said, if someone’s health situation is such that they deem it fitting and proper to leave, it is not my place pass judgment on that decision.

I get that your mention of income is in the context of why it was appropriate for you to stay. However, income is not a measure of worthiness, and a more modest description would be preferable in my opinion.

……………………………. Sharon provided “

You might want to refer to this Korean study found in science direct.

sciencedirect.com/science/a…

“Suicide risk in PD patients is approximately 2 times higher than that in the general population. Psychiatric disorders, and also L-dopa medication need further attention with respect to suicide.”

Another good overview can be found in Neuropsychiatry Review

jnnp.bmj.com/content/90/7/822

“Suicide is consistently listed among the top 10 causes of death in the USA, with rates steadily climbing throughout the 21st century and reaching an annual rate of 13.4 deaths per 100 000 in 2016.6 7 It is a dominant cause of mortality among the elderly and persons with neurological diseases including stroke,9 Huntington’s disease10 and epilepsy.”

” Depression in particular is common in PD, with one meta-analysis suggesting that 17% of PwP suffer from major depressive disorder and 35% suffer from clinically significant depressive symptoms.”

In contrast, suicide is not a major cause of PD death (which are falls and pneumonia.)

Atypical

Atypical parkinsonisms are conditions in which an individual experiences some of the signs and symptoms of Parkinson’s disease (PD) — tremor, slowness, rigidity (stiffness), and/or walking and balance problems — but does not have PD. Atypical parkinsonism can be due to certain medications (some anti-nausea and antipsychotic drugs), other brain disorders (repeated head injury or multiple small strokes) or neurodegenerative diseases.

Parkinson’s Plus

The neurodegenerative diseases, which cause damage or death of brain cells, include corticobasal degeneration, Lewy body dementia, multiple system atrophy and progressive supranuclear palsy. These conditions are often referred to as “Parkinson’s plus” because they mimic PD but have extra associated symptoms (the “plus”). They can be misdiagnosed as Parkinson’s disease because no blood or imaging test can, on its own, make a definitive diagnosis. (As with PD, the diagnosis is based on a person’s medical history and physical examination.) Early in the course, people with Parkinson’s plus syndromes also may get some benefit from levodopa, the drug most commonly used to treat PD. A poor response to levodopa, development of additional symptoms and more rapid progression of disease may eventually differentiate Parkinson’s plus from PD, although it can take years for these differences to emerge. As with PD, no disease-modifying therapy has been discovered for any of the neurodegenerative atypical parkinsonisms so treatment is symptomatic and supportive.Corticobasal Degeneration (CBD)Lewy Body Dementia (LBD)Multiple System Atrophy (MSA)Progressive Supranuclear Palsy (PSP)

Management of Parkinson’s Plus

These diseases are complex conditions that progress over time. As ongoing symptoms worsen and new symptoms arise, a person’s needs will change and caregivers’ roles and responsibilities will evolve. A team approach involving the person with disease, caregivers, family members and multiple medical professionals, is necessary to address the multitude of symptoms. As with PD, no disease-modifying therapy has been discovered for the neurodegenerative atypical parkinsonisms. Treatment relies on medications to lessen symptoms, allied health care services, assistive devices (canes or walkers) when necessary and caregiver support. Palliative care specialists can be especially helpful consultants for managing symptoms and coordinating goals of care.

Levodopa is usually the initial therapy for motor symptoms, although most people do not get a significant or long-term response. Other Parkinson’s medications are sometimes used in conjunction with or instead of levodopa, but in general these are not very effective either. For dystonia, Botox injections can be helpful, and for associated non-motor symptoms (such as memory, behavioral or sleep disturbances), doctors may prescribe a variety of other medications.

Physical and occupational therapy are beneficial, specifically for dystonia, gait and balance problems, and falls. In earlier stages of disease, therapists can develop programs aimed at maintaining mobility, preventing falls or falling in ways to minimize injury. They can also assess the need for a cane or walker. In advancing disease, therapists can teach exercises to maintain joint range of motion, evaluate the home for safety and suggest modifications or adaptive equipment (such as shower grab bars or a raised toilet seat), and determine the appropriate type of wheelchair if one is necessary.

Speech therapists can recommend language exercises for speech disturbances and dietary and/or mealtime adjustments for swallowing problems. If swallowing problems are particularly severe (leading to weight loss, choking or pneumonia), your therapist or doctor may discuss starting a feeding tube. While not always required, it’s worth thinking about this possibility early on so that a person (and their caregiver’s) thoughts can be taken into full consideration.

Throughout the course, social workers can provide educational resources, link to support groups and assist with finding in-home care services or alternative living situations. Palliative care providers can be consulted at any point for help with managing symptoms and determining goals of current and future care. In conjunction with a person’s movement disorder specialist, palliative care experts can aid in optimizing medical therapy while lending extra emotional and spiritual support, and c

https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?atypical-parkinsonism

Humpty Dumpty moments

Neither PwP nor a doctor can predict which symptoms will arise or the severity of those symptoms. It is a lifelong and progressive disease, with symptoms steadily worsening over time, therefore fall prevention for many is the first call to action for preparing their loved one for the journey ahead

Teri wrote : An approach to avoid injury while falling:. Knees, ankle, and all the rest, most important to protect is the HEAD.

So many falls went straight to my head. They didn’t hurt A lot, but I sure got worried as they piled up. So I decided that before my almost inevitable HUMPTY DUMPTY moment, when all the king’s horses and all the king’s men couldn’t fix a thing, I would find a helmet. And this is what I found (sorry, the photo disappeared) I paid $176.00 for it out of pocket; Medicare wouldn’t cover it I have fallen and hit my head many times since, AND IT WORKS

…………………………………………….

A pastor recently typed: Don’t let pride or stubbornness get you injured or dead
use a walking aid to prevent falls. My motto, “I’ll crawl before I’ll fall.” and I have done so. Bible says ‘pride goeth before a fall.’ May God bless us on this journey!!!

——————— But to consider the feelings of the PwP, to allow them to not feel conspicuous, and normal, I found two Ribcap products. (see the links)

An owner and wearer of two Ribcap products, the baseball style hat and also the beanie. I love how ‘Protection meets fashion’ in these beautifully crafted pieces of headwear and at-risk persons like myself can wear head protection without the worry of any stigma.

Falls and Common Household Hazards

If you or a loved one has Parkinson’s disease, here are tips for preventing falls around the home:

Floors. Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its accustomed place.
Bathroom. Install grab bars and nonskid tape in the tub or shower. Use nonskid bath mats on the floor or install wall-to-wall carpeting.
Lighting. Make sure halls, stairways, and entrances are well lit. Install a night light in your bathroom or hallway. Make sure there is a light switch at the top and bottom of the staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
Kitchen. Install nonskid rubber mats near the sink and stove. Clean up spills immediately.
Stairs. Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it may be helpful to arrange most of your activities on the lower level to reduce the number of times stairs must be climbed.
Entrances and doorways. Install metal handles on the walls adjacent to doorknobs of all doors to make it more secure as you travel through the doorway.

Tips for Maintaining Balance With Parkinson’s Disease

Keep at least one hand free at all times; try using a backpack or fanny pack to hold things rather than carrying them in your hands. Never carry objects in both hands when walking as this interferes with balance.
Attempt to swing both arms from front to back while walking. This may require a conscious effort if Parkinson’s disease has diminished your movement; however, it will help you to maintain balance, posture, and reduce fatigue.
Consciously lift your feet off of the ground when walking. Shuffling and dragging your feet may cause you to lose your balance.
When trying to navigate turns, use a “U” technique of facing forward and making a wide turn, rather than pivoting sharply.
Try to stand with your feet shoulder width apart. When your feet are close together for any length of time, you increase your risk of losing your balance and falling.
Do one thing at a time! Don’t try to walk and accomplish another task, such as reading or looking around. The decrease in your automatic reflexes complicates motor function, so the less distraction, the better!
Do not wear rubber or gripping soled shoes, they may “catch” on the floor and cause tripping.
Move slowly when changing positions. Use deliberate, concentrated movements and if needed, use a grab bar or walking aid. Count 15 seconds between each movement. For example, when rising from a seated position, wait 15 seconds after standing to begin walking.
If you become “frozen,” visualize stepping over an imaginary object, or have someone place their foot in front of yours to step over. Try not to have a caregiver or companion “pull” you, this may throw you off balance and even prolong the episode.
If balance is a continuous problem, you may want to consider a walking aid such as a cane, walking stick, or walker. Once you’ve mastered walking with help, you may be ready to try it on your own again!

A word of caution

It is unwise to assume that all new symptoms are just due to the progression of Parkinson’s or in response to a person’s Parkinson’s medication. I have followed a chain of conversation on a Parkinson’s chat room used by both Parkies and their care givers. What follows began a month ago with a daughter’s concern for her mother’s decline in health. The daughter just posted the following:

“Thank you all for your insight and caring. All things we tried did not help. It turns out that while we were focusing on Mom’s PD, she was slowly and unknowingly overdosing on Metformin (Glucophage) which was supposed to control her type 2 diabetes. She had been taken off her other diabetes medicines because she was otherwise able to control glucose with diet. I don’t know why her GP left her on such a high dose of Metformin– 1500mg/day! So the metformin caused a build up of lactic acid, which caused kidney failure and sepsis, and she is now at this moment in a critical care unit fighting for her life, on dialysis, blood transfusions, and in a medial coma. We don’t know day to day if she will recover from this (she went in to the hospital by ambulance 6 days ago) and are preparing to let her go if she doesn’t improve. We have had small flickers of hope: her blood levels are better, kidneys have started to work a little, she may be able to be weaned off the respirator any day. But we are in a horrible limbo waiting, and all the while cannot even visit her due to Covid restrictions.”

“I post this with a heavy heart and in hopes that anyone out there who takes metformin will insist on regular re-evaluation on the need/dose for this medicine. All the symptoms were there with my mom: extreme fatigue, confusion, loss of appetite and vomiting, severe dehydration, muscle weakness, hallucinations, all with a rapid decline in overall health– but no one thought to look at those symptoms as anything other than PD issues. Please please if you or a loved one takes Metformin and has any of these symptoms, a simple blood test is all it takes to rule out metformin overdose (the results will show high lactic acid).”

My step mother is suffering with kidney failure … possibly due to similar medication overdosing.

I hope someone finds this information helpful.

Poling Update

As I reported earlier, I’ve learned about intentional walking… aka Fast walking. The goal is to get up to an hour a day… 3 or 4 times a week. So I was doing two laps around the block for John’s once around. But since implementing the poles’ John is able to walk faster, and I am pushed to keep up with him, so it has been super nice.

John says he can walk faster because he is putting his weight onto the poles which relieves his hip and leg pain. I have a walking partner and Pandora on my phone playing music from my pocket. The Distance we walked the last time was 1.25 mile. in 40 minutes. We have ventured further and further into our neighborhood. Life is good.

Sorry, I’ve been focusing on Christmas letters instead of writing on the blog… and I know, I somehow lost a bunch of links in the index that I need to fix. But I’m happy to report I think I am holding my own, quite well.

The letter

There are links included in her letter. I’d encourage you to take time to view them. Most of them seemed to be YouTube – Ted talks.

IF I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.” (she is a physical therapist)

“Dearest Friend,

Today likely didn’t go the way you planned nor wanted it to go. Whether you’re feeling confused, frightened, angry, or apathetic, I want you to know I’m here for you. I know a new diagnosis of Parkinson’s can knock you for a loop, but consider this letter an invitation to a new chapter of your life – one that is much brighter than you may be imagining at this moment.

I think the tendency is for someone to say “I’m sorry” right about now, but I’m going to hold off on that lingo because I have a feeling you’re likely not looking for sympathy. Instead, I want to offer my support. Please don’t consider this a hand-out (I know you’re not looking for that either) – I just ask that you consider what I’m about to say with a brave and open heart. Many people that I care about have stood where you stand now with questions, looking for hope. I’ve learned a lot watching them go through this process and, while I won’t pretend to know all the answers, what follows is my best advice for the next chapter of your life…

1 You are Not broken.

It may be your default to take this diagnosis as a sign that your body is broken or even revolting against you but your body is simply telling you it needs serious TLC. It’s likely been telling you this for a while but up until now it’s been easier to ignore than pay attention to. Today your body shouted loud enough for you to hear it so now begins the journey of listening and tuning in to what it’s telling you. Your body is resilient and always seeking health and repair – you just need to give it what it’s asking for.

2 Your Future has Not been decided for you.

There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in Your hands, no one else’s, and your attitude is everything.

3 Don’t Hide.

Your instinct is likely to hide your diagnosis and pretend all is well. The thought of walking into a Parkinson’s support group may make you want to cry – after all, who wants to be face-to-face with a future they’d rather not confront? Luckily, Parkinson’s symptoms aren’t contagious! Joking aside, the Parkinson’s community is incredibly strong and supportive and is an amazing resource. Just because others present with certain symptoms doesn’t mean that’s your fate and learning from their experience is valuable beyond measure. Find a local support group, meet-up, or just another like-minded person with Parkinson’s (PWP) who can act as a confidant through this process. There are many online support groups and you’ll definitely be able to find one that matches your current situation and attitude. Seek out resources that build you up and have a positive impact. Remember, there is strength in numbers and no one can (or should) go at this alone. JOIN OUR TRIBE – SIGN UP FOR OUR NEWSLETTER

4 Start Exercising. Now.

The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime. The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!

5 Small changes = Huge difference.

Observe your diet. We swallow food just like we swallow pills – why expect that one will have an affect on your symptoms and the other will not? Toxins come in many forms – pesticides, hormones, pollution, food additives and sugar, to name a few – and they burden your immune system and brain. Eat as organic and close to nature as you can afford. Explore supplements but realize you can’t supplement away a bad diet. (Healthy) fats are your friend. Find activities that calm your mind and fill your soul – do them daily. Meditate. Laugh. Prioritize sleep – this is where your brain heals and flushes out toxins. Treating your body like a temple will dramatically affect the way you move, think, and feel.

6 Take Action Now, don’t wait.

You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong – I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them. Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health and future your top priority.

7 Find Acceptance to Dissolve Fear

Accepting where you are is different than surrendering – it inspires action instead of passivity. Embrace where you are in this moment. You may have heard the saying, “What you resist, persists”, so don’t push away your feelings. Instead, feel them fully. Cry.. Scream.. Laugh.. By being here, right now, you’ll find that you’re OK. Fear has no place here because you’re not in any immediate danger. The fear comes when you leave this moment and your mind floats into a fabricated future. Stay present and focus on what you can do in this moment. I believe in you.

“There is something you must always remember:
You are braver than you believe, stronger than you seem, and smarter than you think.

— Winnie the Pooh
With all my love and support,

Through Sarah’s eyes

There are links included in her letter. I’d encourage you to take time to view them. Most of them seemed to be YouTube – Ted talks.

IF I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.” (she is a physical therapist)

“Dearest Friend,

Today likely didn’t go the way you planned nor wanted it to go. Whether you’re feeling confused, frightened, angry, or apathetic, I want you to know I’m here for you. I know a new diagnosis of Parkinson’s can knock you for a loop, but consider this letter an invitation to a new chapter of your life – one that is much brighter than you may be imagining at this moment.

I think the tendency is for someone to say “I’m sorry” right about now, but I’m going to hold off on that lingo because I have a feeling you’re likely not looking for sympathy. Instead, I want to offer my support. Please don’t consider this a hand-out (I know you’re not looking for that either) – I just ask that you consider what I’m about to say with a brave and open heart. Many people that I care about have stood where you stand now with questions, looking for hope. I’ve learned a lot watching them go through this process and, while I won’t pretend to know all the answers, what follows is my best advice for the next chapter of your life…

#1 You are Not broken.

It may be your default to take this diagnosis as a sign that your body is broken or even revolting against you but your body is simply telling you it needs serious TLC. It’s likely been telling you this for a while but up until now it’s been easier to ignore than pay attention to. Today your body shouted loud enough for you to hear it so now begins the journey of listening and tuning in to what it’s telling you. Your body is resilient and always seeking health and repair – you just need to give it what it’s asking for.

#2 Your Future has Not been decided for you.

There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in Your hands, no one else’s, and your attitude is everything.

#3 Don’t Hide.

Your instinct is likely to hide your diagnosis and pretend all is well. The thought of walking into a Parkinson’s support group may make you want to cry – after all, who wants to be face-to-face with a future they’d rather not confront? Luckily, Parkinson’s symptoms aren’t contagious! Joking aside, the Parkinson’s community is incredibly strong and supportive and is an amazing resource. Just because others present with certain symptoms doesn’t mean that’s your fate and learning from their experience is valuable beyond measure. Find a local support group, meet-up, or just another like-minded person with Parkinson’s (PWP) who can act as a confidant through this process. There are many online support groups and you’ll definitely be able to find one that matches your current situation and attitude. Seek out resources that build you up and have a positive impact. Remember, there is strength in numbers and no one can (or should) go at this alone. JOIN OUR TRIBE – SIGN UP FOR OUR NEWSLETTER

#4 Start Exercising. Now.

The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime. The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!

#5 Small changes = Huge difference.

Observe your diet. We swallow food just like we swallow pills – why expect that one will have an affect on your symptoms and the other will not? Toxins come in many forms – pesticides, hormones, pollution, food additives and sugar, to name a few – and they burden your immune system and brain. Eat as organic and close to nature as you can afford. Explore supplements but realize you can’t supplement away a bad diet. (Healthy) fats are your friend. Find activities that calm your mind and fill your soul – do them daily. Meditate. Laugh. Prioritize sleep – this is where your brain heals and flushes out toxins. Treating your body like a temple will dramatically affect the way you move, think, and feel.

#6 Take Action Now, don’t wait.

You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong – I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them. Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health and future your top priority.

#7 Find Acceptance to Dissolve Fear

Accepting where you are is different than surrendering – it inspires action instead of passivity. Embrace where you are in this moment. You may have heard the saying, “What you resist, persists”, so don’t push away your feelings. Instead, feel them fully. Cry.. Scream.. Laugh.. By being here, right now, you’ll find that you’re OK. Fear has no place here because you’re not in any immediate danger. The fear comes when you leave this moment and your mind floats into a fabricated future. Stay present and focus on what you can do in this moment. I believe in you.

“There is something you must always remember:
You are braver than you believe, stronger than you seem, and smarter than you think.
— Winnie the Pooh